Discussions By Condition: I cannot get a diagnosis.

MS, celiac, yeast? help!

Hi,Sorry if this is long winded, but here is my situation in brief. I would be happy for any insights: In March of 07, I became very sick, fatigued to the point of not being able to get out of bed for 2 weeks, very dizzy, tingly/itchy feeling on face/top of head, fine motor skills impaired (typing, writing, etc.)--my primary at the time sent me to an ENT--he was the first to mention the MS word to me--was sent to a neurologist who did an MRI. The MRI came back with a 2-3 cm active lesion on the cerebellum. However, they then did a spinal tap which came back "inconclusive" so they were unable to diagnose me definitively with MS, as you need 2 diagnositics/ and or 2 "episodes", I believe, to be definitive. I have not been back to the neuro, but have gone on the visit with other more alternative docs. One is a doctor who specializes in free radical therapy--he ran all manner of tests on me and it turns out I have adrenal fatigue big time, hypoglycemia, possible heavy metal toxicity, high lymphocyte count,(they want to test me for West Nile Virus. Already been tested 2x for Lyme which they say is neg, and 2x for Mono which they say is positive but in the convalescent stage.)higher white blood cell count, high, liver enzymes. He has me on liver detox, protein building protocol along with a gluten free diet. I am also consulting with a woman who thinks I may have Yeast problem so I'm treating for that as well. Currently my symptoms are: terrible fatigue, muscle weakness and some dizziness still. All the other symptoms are abated for a few months now.I guess I'm wondering if I'm on the right track. I am doing better than the beginning, but still very tired. Wondering if it's B12 or Lyme undetected?Any thoughts, ideas would be really appreciated!:rolleyes:

15 Replies:

Alzheimer's main symptom: memory loss.Parkinson's: Shakiness/tremor/rigidityChronic Fatigue Syndrone: debilitating fatigue.You may very well have all of the things listed, but they are part of a bigger picture:CFS or ME (Myalgic Encephalomyelitis) as known in the UK, encompasses all of the symptoms you are having.Lyme? This board tends to favor Ignex labs in CA.Heavy Metal Toxicity? A causitive factor in CFS.B12? CFS "members" are often deficient in B12.B12 deficiencies can supposedly cause lesions in the brain. B12 def. also causes many neuro sx similar to Alzheimer's and diabetic neuropathy. MS: B12 and Lyme are possible causes. Lyme causing CFS? possibly. I am not sure what free radical therapy is. If it involves chelation therapy, be very very careful. You can die from the "chelation" cure as the toxins filter through your kidneys or liver from where they were trapped/pseudo protected in your body to prevent damage to these delicate organs.Have you had any vaccine's, procedures or illness prior to these symptoms?If most of your symptoms have abated, you are lucky, but the fatigue can persist for a while while your body heals.Personally, I can make no specific recommendations as I am still stuck in the "what and why".Others have tried NAET and bio-set treatments/therapy. One on this site says the only cure is a certain antiviral that he/she took for 6 years.Is the cause viral (herpes,EBV, HepB and etc.) or bacterial (lyme, chlamydia, syphillis) or toxic (mercury, heavy metals, aluminum or due to an "overactive" immune response?

In many people B12 deficiency is linked with gluten intolerance/sensitivity. All of you symptoms, whether diseases or not are linked with gluten sensitivity. Google gluten ataxia, also known to form lesions on cerebellum, resulting in many of the symptoms you list above, is best addressed with a gluten free diet. Gluten is a protein found in certain grains, those in the wheat family, barley, rye, and spelt. In the US it is in nearly every processed food. It is a protein our bodies were not designed to digest. In my opinion, the gluten free diet was the best recommendation you could have been given by a doc. If it is MS, many MS sufferers have found relief with a gluten free diet. Gluten sensitivity is a likely candidate if you have already tested negative twice for Lymes. They mimic one another. The antigliadin antibodies that present when a person has untreated gluten sensitivity cause a rise in lymphocytes. The only treatment for gluten sensitivity is a gluten free diet. You will feel improved health within ten days, but it may take up to 2 years to regain fully restored health. Nutrient deficiency is very common in GS due to "leaky gut" syndrome and it takes time to replenish and heal. If you are looking for additional help with a gluten free diet, you can visit glutenfreeandbeyond.org or celiac.com.

Did you just get a basic Lyme/titer test? If so- if a doctor was (IMO) stupid enough to test you with that twice- he was wasting your money and time. He should have send at least your second test to Igenex or another lab equal to their standards, for proper testing. If he was smart enough to do that, and it was still negative, well.. that's another story.It could be a case of (chronic) lyme, or yes, possibly Celiac from what I've read.. there are SO many different diseases that have the same symptoms. I have had 2 MRI's to rule out MS (my dr only said she didn't think so- but then again, she didn't think I had Lyme, and I tested positive for it through Igenex). I was also tested for Celiac, but she didn't buy the results, so she had me tested by an allergist for food allergies.. supposedly I do not have any true food allergies.. however I'm now going to have a colonoscopy tomorrow, and I think samples will be taken to test specifically for that. :rolleyes: (My neuro ended up giving me a bogus dx, which is just so lame.. after my allergy testing, I decided not to go back).You really need to find a good doctor!! (

Hi to all who responded, thank you for the feedback. I appreciate it.The reason I haven't gone back to the neurologist is because my conditionhas not worsened, which would be the only reason to go back, in my opinion, as I have no interest going on interferon drugs. I am on a protocol from a woman who wrote a book on curing MS naturopathically (she had it herself). Her website is: www.annboroch.com. In regard to Lyme, I was on an island off Cape Cod like 2 or 3 years ago.Is it possible that I could still be infected? (There were TONS of ticks--we had to wear tape on our ankles to walk through this one particular field).The gluten free diet I have been on more or less for a few months, but some of the things I was eating I recently found out have gluten, so will go 100% on that.But the anti-yeast program is so tough. I am having what I believe are die off symptoms from the supplements and teas I've been prescribed. Chills and then hot again, stomach pains, gas, and very, (very) loose stools many times a day. My appetite is shot. I will get my doc to order that test for me when I see him next week.Thanks again

MSCeliac Diseaseyeast (candida) these are a few considerations with Chronic fatigue syndromeFind a doctor who thinks it's a real diseaseFind another doctor who does NAET/Bioset therapyread around this forum, you are not alonestick around, there's more info on the way

Thank you, mommycat and everyone for your input and feedback--it's really nice to know there are other people out there going through this. Sometimes you feel so completely alone struggling with an illness, (even amongst good friends...)I don't know about CFS or ME. It had not been on my radar at all until you mentioned it, but I will follow up with it. As far as the NAET/bioset treatments, I am going to do some research on that as well. I have never heard of it until now. I am also going to ask my doctor to run a celiac test as well as a lyme test (through Ignex labs). Also going to ask him about B12. He did a bunch of blood chemistries on me and it turns out my homocysteine level is high. Doesn't that mean I have a B12 deficiency? Also, I found it interesting about the gluten ataxia link. I've never heard of that either: interesting that the lesion they found was on my cerebellum! One other note of interest: my labs also show that I have some sort of ongoing viral infection, but we don't know what it is...do you have any more info on the woman who took the antiviral:?Thanks again to all,L

The ongoing viral infction is CFS. It is Chronic...it doesn't go away. Famvir is the name of the antiviral that the other woman had posted about. I have CFS so I wrote it down. Will be researching info on this as well.Find a doctor who believes CFS is a real disease. Then you will begin to see progress.Best of luck to you....mommy cat

CFS is a virus? I guess I'm really confused now. Do people with CFS have lesions in their brains? How do I know if I have:B12 deficieny?MS?Lyme?CFS?Yeast?Gluten intolerance?I am overwhelmed...:confused:

CFS is the after effects of a virus. We are realizing that it does infact affect many people and is the underlying cause of many other illness or the reason for illnesses that pre-existed, to increase.There is alot of things to take into consideration. MS, celiac and yeast are just three considerations. There are many more.Find a doc who believes CFS is realResearch information on how to eat, boosting your immune systemdrink plenty of water(best with fresh squeezed lemon) for detoxtake a daily vitaminthere is a lot of information out there. Even info for your doc on how to test for everything you're asking about.Sadly, the patients are learning more about this disease than the doctors. Some of the best information you will get regarding this disease will be right here in this forum. Stick around, you are not alone...mommy cat:)

Unfortunately, diagnosis is hard to come by, and be accurate for a lot of people with similar issues. You know already that you can see lesions in the brain with MS, but you can with Lyme, as well. Not only that, but a spinal tap is almost a worthless procedure to have done to determine MS, because the same organisms found in the fluid are the same as what is found with Lyme. :( I don't know much about CFS, but it's interesting to hear you can find lesions with that, as well.

sylvieA study group of MS patients participated in a research trial recently. All had a confirmed MS diagnosis. Over 90% of them tested positive for antibodies to a cryptovirus in their cerebro-spinal fluid. Many doctors, Scientists and researchers are beginning to believe that viruses may be responsible for many of our Neuorological diseases like MS, ALS, Parkinson's, Alzheimers, CFS/ME and so on. All of these diseases form lesions on the brain. There are connections here, not just coincidences and correlations.CFS is the macrodiagnosis...MS, ALS, Alzheimer's, Diabetes, cancers,and many other diseases are the microdiagnoses.Research the info I've provided, you will find it is true.many CFS/ME foundations are funded privately, not by the government and they are doing research trials everyday. This disease process is very complicated. No wonder it's taking so long to figure it all out....

Irich66,What candida protocol are you on? Are you also doing the candida diet? This is very, very hard to do and can make you crazy:confused: ... I empathize. I like to use the food list on www.wholeapproach.com as it focuses on all of the foods you CAN eat, and also lists foods to limit and avoid. NAET(Nambudripad Allergy Elimination Technique) or BIoset (of which I am less familiar with but is an offshoot of NAET) can both test if you have sensitivities to gluten, B12, candida, and others...using acupressure they can clear up these sensitivities so you will no longer have an intolerance. It can be very helpful. I agree it is a daunting task to figure out what is happening. I suspect you may have a few things going on, and considering your trip to Cape Cod I would look into the Lyme thru Igenex labs, just to rule this out. Best wishesDOM

Thank you again, to all of you , for taking time out of your day to give me feedback. What a blessing that is. I am seeing my doctor (Harvard MD, but uses alternative therapies including free radical therapy) a la Sam Queen (can be googled) next week and I've decided to have the following done: 1. Ask for B12 injections as my homocysteine levels are high and this is an indicator of low B12.2. Ask for an Ignex test for Lyme (just to get it settled that I have it or not)3. Ask for a Celiac test4. Ask for a Candida testOn the yeast topic:The naturopath (ann boroch) that I'm working with is affiliated with David Perlmutter, a neurologist who is well known for using "complementary" methods to mitigate diseases of the brain and nervous system. He is pretty amazing if you want to check him out on line. Boroch is my 2nd doctor who believes (along with Perlmutter) that Candida is strongly linked to autoimmune diseases. Yes, she has me on a yeast free diet, and as you said, it's very difficult. :( In addition, I am on a gluten free diet. We all know the connection between gluten and ms, so that could end up being a lifelong deal for me. I need to do more research this week and find out what I can truly eat, b/c between the two, it doesn't look like much!As far as CFS goes, I hear what you are saying, but I have to tackle these other things first. If it is the underlying "macro" then is there anything to do other than attack the symptoms systematically? My blood chemistries did come back with very, very low adrenal (cortisol) levels which explains why I am so god awful fatigued. The muscle weakness and lack of stamina are scarier, in a way, because I used to be such a strong person physically. To me, this is like figuring out a big puzzle (unfortunately I'm the puzzle)and I'm trying to put the pieces together. I do believe that I will lick this, but sometimes I get so scared and cry myself to sleep because I doubt myself. Thank you again to all of you for your feedback. Thanks accuan for the website. I am going to check it out right now...:rolleyes:Warm Regards,L